Australians Spending Millions To Diagnose A Disease The Government Doesn't Recognise

A mother describes watching her child’s health deteriorate to 30 seizures a day. A woman tells of spending her superannuation trying to get diagnosed. A doctor says GPs are being punished for trying to treat their patients.

These are just some of the astounding anecdotes from the Lyme Disease Roundtable Hearing at Parliament House in Sydney on Friday morning.

Experts and people living with tick-borne diseases came together to jointly call for Lyme-like diseases to be identified and recognised in the Australian health system, however doctors cautioned against rushing treatments that hadn't been proved.

In the U.S. lyme disease is caused by a specific bacteria that lives on ticks, and infects people when bitten, causing a range of symptoms from severe fatigue to palsy, seizures and neurological problems like memory loss.

In Australia, people present with these same symptoms after tick bite, but the lyme-causing bacteria has not been found.

Instead, a different kind of bacteria is present -- most commonly called borrelia -- however the diseases caused are hard to characterise and Australia does not have a clinical definition or diagnosis for it.

In other words, the conditions do not exist in Australian medicine, forcing people to spend thousands to seek diagnosis and treatment in Germany, Malaysia and the U.S.

Department of Health representative and doctor Gary Lum, however, said tick-borne diseases were not straightforward.

"Long-term treatment is favoured by some practitioners and argued against by others," Lum said.

"Controversy remains around causation and treatment."

Royal Australian College of General Practitioners representative Nigel Stocks agreed more needed to be known about the disease and its treatment before guidelines could be established

"It is a very difficult area and it can only be solved with further research," Stocks said.

Schloeffel said some patients were treated for several months with a protocol of supplements, antibiotics and therapy.

Some cases, he recommended they go to Germany for the “highly controversial” hyperthermia treatment where people spend nine hours with their body heated to 41 degrees in a clinic, often while receiving a high dose of antibiotics.

“Over 1000 Australians have been -- patients are going there every week," Schloeffel said. "We’re the biggest supplier of patients.”

As for those who are treated in Australia, he said blood tests alone could cost up to $3000 and antibiotics were more than $400 a week with with supplements costing about $600 a month.

And that’s if you could find a doctor to prescribe them.

“Most GPs are constantly fearful someone will dob them in for treating someone,” Schloeffel said.